Coming Together
For a Better Future

Join the Fragile X Research Registry

What is The Fragile X Research Registry?

It is a database of people who want to be notified about fragile X research studies.

It is a confidential, convenient way for families to connect with studies and move research forward—there is no cost or obligation.

Why do we need you?

Having a national registry creates a powerful advantage for fragile X research—more involvement means higher quality results.

Having volunteers on the ready will help mobilize studies quickly and accelerate the progress in understanding and treating this complex disorder.

Our best chance of success is to work together—researchers and families from across the country—in pursuit of advancements to improve the lives of people affected by fragile X syndrome.

Who are we?

The University of North Carolina and the University of Wisconsin manage this resource together with support from the National Institutes of Child Health and Human Development (NICHD). Our goal is to support research by our colleagues in the national network of Eunice Shriver Intellectual and Developmental Disabilities Research Centers and in the broader FX research community.

Who can join?

Children and adults with fragile X-associated disorders may join.

The Registry needs to reflect the general population of the United States. We encourage individuals of all races and ethnic groups to sign up.

The Registry is for families who have individuals with:

  • Fragile X syndrome - full mutation or mosaic
  • Fragile X premutation
  • Fragile X-associated primary ovarian insufficiency (FXPOI)
  • Fragile X-associated tremor/ataxia syndrome (FXTAS)